Cerebral Palsy Family Support Network TM
Dedicated to helping families find the support services they need for children with disabilities.

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Cerebral Palsy Family Support TM  

 


Dedicated to helping families with children who have Cerebral Palsy or any other Neurological and/or Learning Disability find the support, resources and services they need.

Glossary of common Cerebral Palsy Terminology 

The following are terms most commonly used when talking of Cerebral Palsy. This list is by far not complete but it does incorporate the most commonly used words and terms used when referring to conditions of CP. 


SITEMAP 

Alphabetical listing of most pages on this site: Exceptions will be state and county pages. Some are not linked from this sidebar but from within a page

The CP Links Page is where you will find most Federal, State and local County pages.

THE HOMEPAGE

WHAT IS CP
CEREBRAL PALSY

My attempt to clarify CP you may find the information provided by NINDS is more specific and detailed

TREATMENT of  CP
There are many different treatments and I only name those I am familiar with

Physical Therapy
How it is essential to maintain range of motion

Occupational Therapy
How it is essential to maintain quality of life

Speech Therapy
What I know through my experience By far not even close to what you should know

Medication and Orthotics
Again what I know through experience Much more can be had searching the net or talking with doctors and therapists

CP LINKS
To Federal, State, County, City / Town and School District WebPages. Health links and hopefully links to local disability sites and activity and events calendars just drill down to the page you want

Cerebral Palsy Glossary
Terms used when referring to items related to CP . Many of us may see these on a doctors report and not know what it really means.

More Information of CP provided by NINDS
Perhaps a bit more concise and informed than my attempt to tell of what CP is. 
  • What Causes Cerebral Palsy?

  • What are the Risk Factors?

  • Can Cerebral Palsy Be Prevented?

  • What Are the Different Forms?

  • What Other Conditions Are Associated With Cerebral Palsy?

  • How Does a Doctor Diagnose Cerebral Palsy?

  • How is Cerebral Palsy Managed?

  • What Specific Treatments Are Available?

  • Drug Treatments

  • Surgery

  • Orthotic Devices

  • Assistive Technology

  • Alternative Therapies

  • Are There Treatments for Other Conditions Associated with Cerebral Palsy?

  • Do Adults with Cerebral Palsy Face Special Health Challenges?

  • What Research Is Being Done?

  • Where can I get more information?

447 Specific Neurological Disorders
Many of these 447 Neurological disorders do not fall under the heading of CP but are disabilities nonetheless. Links to resources for all 447

My take on the IEP, IDEA 2004 Public Law 94-142 & Public Law 101-476, and the 504 plan.
In 1990, changes to Public Law 94-142 arrived through the Education of the Handicapped Act Amendments of 1990 (Public Law 101-476). Most apparent was the law’s name change – instead of the Education of the Handicapped Act, it is now called the Individuals with Disabilities Education Act. IDEA 2004

IEP overview
A Guide to the Individualized Education Program with sections highlighted and comments by me

504 plan & IDEA Q&A
Protecting Students and others with Disabilities also a list of accommodations and modifications as would relate to the school environment.  More on accommodations in the Parent and Educator Guide Appendix E

Parent & Educator Guide of 504 Plan concepts and real life accommodations. Drafted by the OSPI and 5 Puget Sound area School Districts but would be a valuable asset to any fighting for their child's 504 accommodations anywhere U.S.A. 

IDEA 2004 summary&
Title 1 IDEA as written (Public Law 94-142 &
Public Law 101-476) 
A lot of legalese and unless you are a lawyer or are looking for specific law probably will not be of much benefit. You will better spend your time reading the Parent and Educator Guide, the IEP overview and the 504 plan & IDEA Q&A

Washington State Chapter 392-172 WAC SPED special education and the IEP
This is Washington State law as regards the IEP and special education
Also a bit about our (current Nov 08) personal battle for Amber

Pierce County Events
Local events for the disabled If you know of any let me know I'll post them here

CONTACT US

DONATIONS/GIFTS

AMBER'S STORY
Amber's story from birth to I started this website. Her continuing story is in the Blog

AMBER'S PARENTS
A bit about us and maybe you will get to know why we did what we did and continue to do what we do by knowing a bit about us.

Blog of Amber and Family
The continuing story of Amber and family updated as I have time.

SHARE YOUR STORY
In the share your story section people like you will post their unique experiences and through what is said you may find you are not alone. You may also find a friend and someone you can relate to. And possibly a way to realize your own goals.

MEMBER PAGES
Those who have joined with me to try to educate everyone of the trials of having a child with CP or other disability and where to find information

CP FAMILY LINKS
Websites created by people who have CP or someone in their family has CP. Sites whose pages are not directly disability related.  Net-etiquette applies. All sites are subject to approval. Banners and text allowed on these links.

DISABILITY LINKS PAGE
These would be links to commercial disability links pages where you may find more detailed information of specific disabilities as well as commercial products and services for the disabled. Links are text only with a line or two of information of the link posted.. 

NON CP RELATED
OTHER LINKS PAGES
Posted 1st come 1st served. We hope to have many of our friends  and supporters post their pages here. Net-etiquette applies. 
All sites are subject to approval. All Non-CP links are text only with a line or two of information of the link posted.
Please notify me of any broken links so I can remove or fix them

JOIN OUR NETWORK
Join with me in trying to educate the public of CP and other disabilities

WHY THIS SITE?
What motivated me to build this site

  CONTACT US
Direct your comments to Robert.

Making Money Online (or not) 
What I've tried and what I believe. The things to watch out for.  Many with disabilities have a very difficult time working a 9 to 5 so working online is a viable alternative. However be wary of those who will take your money and not deliver any worthwhile information.

Other sites I have or to be more precise the wife has and I take care of.

http://tamicraft.com 

http://vintageslips4u.com

 

Glossary

acquired cerebral palsy — cerebral palsy that occurs as a result of injury to the brain after birth or during early childhood.

Apgar score — a numbered scoring system doctors use to assess a baby's physical state at the time of birth.

anticholinergic drugs — a family of drugs that inhibit parasympathetic neural activity by blocking the neurotransmitter acetylcholine.

asphyxia — a lack of oxygen due to trouble with breathing or poor oxygen supply in the air.

ataxia (ataxic) — the loss of muscle control.

athetoid — making slow, sinuous, involuntary, writhing movements, especially with the hands.

bilirubin — a bile pigment produced by the liver of the human body as a byproduct of digestion.

bisphosphonates — a family of drugs that strengthen bones and reduce the risk of bone fracture in elderly adults. 

botulinum toxin — a drug commonly used to relax spastic muscles; it blocks the release of acetylcholine, a neurotransmitter that energizes muscle tissue. 

cerebral — relating to the two hemispheres of the human brain.

cerebral dysgenesis — defective brain development.

chemodenervation — a treatment that relaxes spastic muscles by interrupting nerve impulse pathways via a drug, such as botulinum toxin, which prevents communication between neurons and muscle tissue. 

choreoathetoid — a condition characterized by aimless muscle movements and involuntary motions.

computed tomography (CT) scan — an imaging technique that uses X-rays and a computer to create a picture of the brain's tissues and structures.

congenital cerebral palsy — cerebral palsy that is present at birth from causes that have occurred during fetal development.

contracture — a condition in which muscles become fixed in a rigid, abnormal position, which causes distortion or deformity.

cytokines — messenger cells that play a role in the inflammatory response to infection. 

developmental delay — behind schedule in reaching the milestones of early childhood development.

disuse atrophy — muscle wasting caused by the inability to flex and exercise muscles. 

dyskinetic — the impairment of the ability to perform voluntary movements, which results in awkward or incomplete movements.

dystonia (dystonic)  a condition of abnormal muscle tone.   

electroencephalogram (EEG) — a technique for recording the pattern of electrical currents inside the brain.

electromyography — a special recording technique that detects muscle activity.

failure to thrive — a condition characterized by a lag in physical growth and development.

focal (partial) seizure — a brief and temporary alteration in movement, sensation, or autonomic nerve function caused by abnormal electrical activity in a localized area of the brain.  

gait analysis — a technique that uses cameras, force plates, electromyography, and computer analysis to objectively measure an individual's pattern of walking.

gastroesophageal reflux disease (GERD) — also known as heartburn, which happens when stomach acids back up into the esophagus.  

gastrostomy — a surgical procedure that creates an artificial opening in the stomach for the insertion of a feeding tube.

gestation — the period of fetal development from the time of conception until birth.

hemianopia — defective vision or blindness that impairs half of the normal field of vision.

hemiparesis — paralysis affecting only one side of the body.

homonymous — having the same description, name, or term.  

hypertonia — increased muscle tone.

hypotonia — decreased muscle tone.

hypoxic-ischemic encephalopathy — brain damage caused by poor blood flow or insufficient oxygen supply to the brain.

intracranial hemorrhage — bleeding in the brain.   

intrapartum asphyxia — the reduction or total stoppage of oxygen circulating in a baby’s brain during labor and delivery.

intrathecal baclofen — baclofen that is injected into the cerebrospinal fluid of the spinal cord to reduce spasticity. 

intrauterine infection — infection of the uterus, ovaries, or fallopian tubes (see pelvic inflammatory disease for a more detailed explanation).

jaundice — a blood disorder caused by the abnormal buildup of bilirubin in the bloodstream.

kernicterus — a neurological syndrome caused by deposition of bilirubin into brain tissues. Kernicterus develops in extremely jaundiced infants, especially those with severe Rh incompatibility.

kyphosis — a humpback-like outward curvature of the upper spine.

lordosis — an increased inward curvature of the lower spine. 

magnetic resonance imaging (MRI) — an imaging technique that uses radio waves, magnetic fields, and computer analysis to create a picture of body tissues and structures.

nerve entrapment — repeated or prolonged pressure on a nerve root or peripheral nerve.

neuronal migration — the process in the developing brain in which neurons migrate from where they are born to where they settle into neural circuits. Neuronal migration, which occurs as early as the second month of gestation, is controlled in the brain by chemical guides and signals.

neuroprotective — describes substances that protect nervous system cells from damage or death.

neurotrophins — a family of molecules that encourage survival of nervous system cells. 

off-label drugs — drugs prescribed to treat conditions other than those that have been   approved by the Food and Drug Administration.

orthotic devices — special devices, such as splints or braces, used to treat posture problems involving the muscles, ligaments, or bones.

osteopenia — reduced density and mass of the bones. 

overuse syndrome (also called repetitive strain injury) — a condition in which repetitive movements or constrained posture cause nerve and muscle damage, which results in discomfort or persistent pain in muscles, tendons, and other soft tissues.  This can happen in various parts of the body, but is most likely to happen in the arms, legs, or hands. 

palsy — paralysis, or the lack of control over voluntary movement.

-paresis or -plegia — weakness or paralysis.   In cerebral palsy, these terms are typically combined with other phrases that describe the distribution of paralysis and weakness; for example, quadriplegia means paralysis of all four limbs. 

pelvic inflammatory disease (PID, also sometimes called pelvic infection or intrauterine infection) — an infection of the upper genital tract (the uterus, ovaries, and fallopian tubes) caused by sexually transmitted infectious microorganisms. Symptoms of PID include fever, foul-smelling vaginal discharge, abdominal pain and pain during intercourse, and vaginal bleeding.  Many different organisms can cause PID, but most cases are associated with gonorrhea and chlamydia.

periventricular leukomalacia (PVL) — “peri" means near; "ventricular" refers to the ventricles or fluid spaces of the brain; and "leukomalacia" refers to softening of the white matter of the brain.   PVL is a condition in which the cells that make up white matter die near the ventricles.  Under a microscope, the tissue looks soft and sponge-like. 

placenta — an organ that joins a mother with her unborn baby and provides nourishment and sustenance.   

post-impairment syndrome — a combination of pain, fatigue, and weakness due to muscle abnormalities, bone deformities, overuse syndromes, or arthritis.

quadriplegia — paralysis of both the arms and legs.

respite care — rest or relief from caretaking obligations.

Rh incompatibility — a blood condition in which antibodies in a pregnant woman's blood attack fetal blood cells and impair an unborn baby’s supply of oxygen and nutrients.

rubella — (also known as German measles)  a viral infection that can damage the nervous system of an unborn baby if a mother contracts the disease during pregnancy.

scoliosis — a disease of the spine in which the spinal column tilts or curves to one side of the body.

selective dorsal rhizotomy — a surgical procedure in which selected nerves are severed to reduce spasticity in the legs.

selective vulnerability — a term that describes why some neurons are more vulnerable than others to particular diseases or conditions.  For example, motor neurons are selectively vulnerable to the loss or reduction in levels of the neurotransmitter dopamine, which results in the weakness and paralysis of amyotrophic lateral sclerosis (ALS, commonly called Lou Gehrig’s disease).

spastic (or spasticity) — describes stiff muscles and awkward movements. 

spastic diplegia (or diparesis) — a form of cerebral palsy in which spasticity affects both legs, but the arms are relatively or completely spared.

spastic hemiplegia (or hemiparesis) — a form of cerebral palsy in which spasticity affects an arm and leg on one side of the body.

spastic quadriplegia (or quadriparesis) — a form of cerebral palsy in which all four limbs are paralyzed or weakened equally.

stereognosia — difficulty perceiving and identifying objects using the sense of touch.

strabismus — misalignment of the eyes, also known as cross eyes.

telemetry wand — a hand-held device that acts as a remote control, directing the dosing level of a drug via a pump implanted beneath the skin. 

tonic-clonic seizure — a type of seizure that results in loss of consciousness, generalized convulsions, loss of bladder control, and tongue biting followed by confusion and lethargy when the convulsions end. 

tremor — an involuntary trembling or quivering.

ultrasound — a technique that bounces sound waves off tissue and bone and uses the pattern of echoes to form an image, called a sonogram.

Resource for this glossary was NINDS

Some information has been gleaned from public domain sites and information. I have tried to credit that information to those sites that have allowed me to use their information. I would like to say that most all governmental sites are public domain and some private sites will allow use of their material so long as credit is given to them for the information. I have tried to use as much of my own knowledge and experience as possible to fill the pages of this site but in order to provide you with as much information as I can I have used some found elsewhere. When I have done so I will have credited the information to a specific site. I can take no responsibility to the accuracy of that information.

Some  information of cerebral palsy was gleaned from the National Institute of Neurological Disorders and Stroke 'NINDS'

Some Information of the IEP, IDEA 2004 and the 504 plan was gleaned from the U.S. Department of Education and the Office of Civil Rights.

Most of the information on this site is taken from my own years of research and visits with Doctors and things I have learned through years of advocating for my daughter. I cannot remember where each tidbit of information I know came from, though I'm sure I have the therapists, doctors, school officials and a myriad of other resources and people to thank for the knowledge I have.

If you have a web presence we would appreciate your placing a link to our site on yours. If you would care to do so here is our preferred link;

The Cerebral Palsy Family Support Network dedicated to helping support families with a Disabled Child and or disabilities. Helping the disabled find resources and providing a place for the disabled or their parents to congregate and have their questions answered.
Cerebral Palsy Family Support Network
Dedicated to helping families find the support, resources and services they need.

And here is the code for this link. Just copy and paste it to a simple text editor like notepad to take out any garbage FrontPage put in and then paste it as you see it here to your html. 

<a href="http://www.cpfsn.org"><img border="0" src="http://www.cpfsn.org/images/buttonsbglogosetc/cpfslogo.gif" width="159" height="151" alt="The Cerebral Palsy Family Support Network dedicated to helping support families with a Disabled Child and or disabilities. Helping the disabled find resources and providing a place for the disabled or their parents to congregate and have their questions answered."></a><BR><b><font face="Arial,Helvetica" color="#000000" size="4"><a href="http://www.cpfsn.org">Cerebral Palsy Family Support Network</a></font></b><BR><b><font face="Arial,Helvetica" color="#FF0000" size="2"> Dedicated to helping families find the support, resources and services they need.</font></b>

Thank You.

 

You may place a simple text link if you wish.

Cerebral Palsy Family Support Network
Dedicated to helping families find the support, resources and services they need.

<b><font face="Arial,Helvetica" color="#000000" size="4"><a href="http://www.cpfsn.org">Cerebral Palsy Family Support Network</a></font></b><BR><b><font face="Arial,Helvetica" color="#FF0000" size="2"> Dedicated to helping families find the support, resources and services they need.</font></b>

 

Make a secure donation/gift through Paypal by clicking on the link below:

Or you can make a donation manually by following one of the steps below.

Donations/Gifts are graciously accepted, Just log on to www.Paypal.com , Click "Send Money" tab and follow the instructions to send money from an existing Paypal account or by any major Credit Card. Use the email address below to make a Donations/Gifts on Paypal.

 

If you do not see an email address it is because you need to enable javascripts. The email is in javascript to foil the spambots.

You can also mail a Donation/Gift to 

Tami Taormina

P.O. Box 4463 

Spanaway, WA. 98387 


Remember to follow the ‘GoldenRule’ and (life, fate, karma, God) may just reward you with a bit more happy days than sad ones.
Thanks
Robert and Tami 

 

 

If you have a site that deals with any disabilities then consider either joining CPFSN.org  (it is totally free) and having a link to your site on the appropriate page (e.g. State, County) as well as the ‘Members’ page and the disabilities links page.

Or doing a simple link exchange and having your site appear on the ‘CP Family’ links page, if you or your child has CP or any disability. Your site does not have to be about any disability so long as you or your child has a disability.

If you do not have a disability or a child with a disability but have a site devoted to any disability you can have a reciprocal link placed on the disability links page

If you do not have a disability or have a site devoted to any disability you can still have a reciprocating link placed on the Non-CP other links page. A link exchange would not only show your support of this site but would increase your ranking with search through having another outside link (SEO).
  
Use the ‘Contact Us’ page and email Robert if you are interested in any link exchange or joining CPFSN.org. Send the information of the site you want us to link to and the Title and information as well as the URL you would like entered. I cannot guarantee that all requests will be honored but I will take a personal look and make a fair and unbiased decision.

To speed up the process have a link to my site on yours and send me the URL. Our preferred links can be found on any of our links pages (left nav-bar)

 

  

 

 

 

 

 

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